Thursday, September 3, 2015

Five-and-a-half years since my last post. No, I'm not dead. Here's a brief summary of what's happened.

In a nutshell, I probably no longer have Lyme disease. I believe a full year of using a Rife frequency generator twice weekly did the trick. The herxes caused by the GB-4000 were legendary. Worse than anything I'd previously encountered. I stuck with it for a year, then stopped because I had other problems developing. It wasn't immediately apparent at the time, but looking back, I believe I was essentially lyme free by the end of 2010.

That's the good news. The bad news is I'm still ill. I have CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. It's a progressive autoimmune condition similar to MS. In my case, it was caused by the Lymerix vaccine I received back in the 2000-2002 timeframe. My neurologist suspects that the tick bite in 2007, which started the disease process, carried a form of lyme that expressed outer surface protein A (OspA). This is the same form that the vaccine was built on. I have had a genetic test done that proves I will be (have been) messed up by the vaccine. And the bite in 2007, and any further OspA tick bites, will be like receiving a booster shot of the vaccine. Not good.

The CIDP symptoms overlap Lyme, but in my case there's a lot more pain (muscle inflammation), and thankfully less 'crazy brain'. I now require narcotic pain medication, where I never took more than a few ibuprofen through all those years of Lyme.

I didn't get a firm diagnosis of CIDP until 2012. My only treatment option is IV-Ig infusion therapy. I began infusions early 2013, but only received 5 doses before stopping. I started having allergic reactions to .... everything. Finally, one day my face and tongue swelled. S-c-a-r-y. I went to the ER immediately. And now I carry an Epi pen everywhere I go.

I didn't know what to do. The allergic reactions were getting worse. So I did nothing, and just stopped treating for a year. As you may imagine, things got worse. Peripheral and central paralysis, and more and more pain. Even the sensitivities I'd associated with Lyme. Odors, sounds, fast-paced environments.

I started infusing again in mid 2014. At first it was done in a hospital setting, due to the risk of anaphylaxis. No more allergy responses, so now I infuse with a home nurse. I've been at it for a year now.

My doctor wants me to infuse weekly for at least a year, and then scale down to every two weeks... forever? But the treatments have a nasty side effect. Migraines. I can't count how many bad, bad migraines I've had this year. And the creeping near-migraines, where you don't realize how bad you feel until your forehead gently touches the desk where you're sitting... those are nearly constant.

The best I've been able to do is infuse once every three weeks. (There's no way I can hook up to the IV and drip more of that stuff into me, if I'm still having migraines from the last time). So my progress has been... slow. In some ways, backwards. But I'm doing the best I can.

I sleep with oxygen, because the phrenic nerves, which drive the diaphragm, are partially paralyzed. When I sleep, I stop breathing, to some degree. It's not sleep apnea. I have a mild case of that, but not worth treating. No, this is nastier. Before I was diagnosed, my overnight blood-oxygen levels were down in the low 60% range. The "no wake" zone of heart attacks and strokes. Everyone is amazed I'm still alive. I did know that I felt terrible during the year leading up to the diagnosis. Like a zombie. Narcoleptic. I even totaled my car because of it. But now I turn on the lovely, big, noisy machine when I sleep, and the sweet, semi-pure oxygen keeps me alive.

The GI tract is also partially paralyzed, and coupled with typical opiate 'slowness', moving food from one end to the other is much more difficult than it should be.

Then there's the peripheral stuff. Legs and feet mostly. They feel like hunks of wood. Or someone else's legs. I don't notice the numbness, because it's always there. But I tend to stumble. My center of gravity is always not quite where I expect it to be. The classic neurologist office test is to stand, feet together, and close your eyes. If I do that, I keel right over, like a felled tree. It's so bad that I bump my head on the sink faucet every morning as I close my eyes to wash and rinse my face. I've developed unconscious coping mechanisms – always holding on to counter edges, stuff like that.

Some mornings I wake and my hands are completely numb and useless, all the way to the elbows. Fortunately that doesn't happen very often, yet.

I'm probably not going to post here very often (maybe another catch-up in 2020). I just wanted those who reach this site while googling their lyme symptoms, that I believe I did get rid of it. Maybe you can, too. By the way, I have no affiliation with the GB-4000 company.

Finally, if you received the Lymerix vaccine, and you have unexplained symptoms, get tested. You may have developed an autoimmune condition. 1.5 million doses were given before it was pulled from the market.